THE CURVE

What is Scoliosis?

The National Scoliosis Foundation

The National Scoliosis Foundation (NSF organization dedicated since 1976 to helping children, parents, adults, and health-care providers to understand the complexities of spinal deformities such as scoliosis.

Severe scoliosis impacts the quality of life, putting pressure on the heart, diminishing lung capacity, and limiting physical activity. Thankfully, through early detection and treatment advances, the worst effects of scoliosis may be prevented.

We are involved in all aspects of scoliosis support, whether the issue is early detection through screening programs, treatment methods, pain management, or patient care. Our focus is on promoting public awareness, providing reliable information, fostering ongoing research in the field, and educating and nurturing the community of those affected by scoliosis.

The Curve Scoliosis

Kaitlyn McAfee

Scoliosis is the lateral bending and twisting of the spine that, when progressed, causes body deformities and compromises internal organs. It affects seven million people in the U.S., with diagnosis most commonly occurring in pre-adolescence and there is no cure.

The disease shows progression ten times more frequently in girls than boys, and the primary age of onset for scoliosis is 10-15 years old. Scoliosis can impact the quality of life with limited activity, pain, reduced respiratory function, or diminished self-esteem.

The vast majority of people with this condition are not expected to require treatment. The problem is we do not know who will get it, why they get it, which will progress, or how far they will progress. Each year scoliosis patients make more than 600,000 visits to private physician offices, and an estimated 30,000 children are put into a brace for scoliosis, while 38,000 patients undergo spinal fusion surgery.

Despite physicians trying to treat this spinal deformity for centuries, 85% of the cases are classified as idiopathic. Consequently, a scoliosis patient's life is exacerbated by many unknowns, and treatments therefore that are often ineffective, invasive, and/or costly. Scoliosis patients also have increased health risks due to frequent x-ray exposure.

June is National Scoliosis month.

Late February, 2012, Kaitlyn went to her doctor for a routine sports physical. She wanted to try out for her school track team. During that appointment, her pediatrician discovered she had scoliosis. Kaitlyn was sent to the hospital for x-rays and then to Vanderbilt to meet with a Pediatric Orthopedist. He recommended she wear a brace sixteen hours a day.

She began doing so in May. It was during that time that Kaitlyn found the Curvy Girls Scoliosis website and began talking to other girls with the same diagnosis. She started the Tennessee group in May 2012 after discovering there was not a state group.

In June 2012, Kaitlyn and her mom attended the first Curvy Girl International Convention and met with other girls and parents and learned more about leading a group. In July, she went back for to Vanderbilt for a check up and the x-rays showed that her curve had progressed significantly and surgery would be required. Kaitlyn had spinal fusion surgery December 2012.

Color the Curve 2013 allowed Kaitlyn to meet many families effected by scoliosis. The inaugural event brought together 1,100 participants. Many of which have been touched by scoliosis. These participants represented 18 states and Canada. Through Color the Curve, we were able to donate $13,000 to the National Scoliosis Foundation.

Color the Curve taught Kaitlyn that it isn't just girls that are diagnosed with scoliosis, boys too are diagnosed and there is very little support for them. She also recognized through her own journey and in listening to the stories from the folks she met, that every member of the family can use counseling when it comes to dealing with scoliosis. Kaitlyn feels strongly about helping these folks and wants to use Color the Curve as her outlet for being able to do this.

Joe O'Brien, President of the National Scoliosis Foundation appointed Kaitlyn to the NSF Angel Brigade in June 2013. The Angel Brigade is an elite group of scoliosis patients who are committed to make a difference. Their goal is to provide help and hope to others in similar situations.

In January, 2014, Kaitlyn decided to step away from Curvy Girls and focus on Color the Curve and ways to reach out to others through this event. She decided to add a second event, Color the Curve After Dark, a glow run/walk. This nighttime event will take place on June 21, 2014 at Greenway Farms. Kaitlyn also decided to start The Curve Scoliosis which will allow her to support girls, boys, and families facing scoliosis through hands-on projects. The first of which is partnering with SHIFT Scoliosis for Wrapped with Love. This project allows Kaitlyn and others to make and donate blankets to local hospitals to be given to those facing scoliosis surgeries. The second project is working to educate schools about the importance of early detection in scoliosis. She will be raising funds to donate scoliometers to all Hamilton County Schools. Her first goal is to donate to all of the middle schools.

In March, 2012, at the age of 11, I found out that I have scoliosis. It was a big surprise! I visited my doctor for a routine sports physical so that I could try out for the track team. My mom and I thought it would be a quick visit. We thought Dr. Rodgers would take a quick look at me and say I was fine to try out for the track team. The visit was nothing like we expected.

The doctor had me bend forward so she could look at my back. As soon as she did, she asked my mom to come look as well. She found that I had scoliosis and suggested we go straight to the hospital for x-rays. We did and within a couple of hours found that I had a 38° S-curve. My pediatrician recommended we see a specialist for a second opinion and a treatment plan. About two weeks after that first doctor’s visit we went to Nashville to see a specialist. He said I needed a brace and recommended the Boston brace. We visited a specialist and he took the measurements to create my brace and let me choose the color, I picked pink. A week later, we went back to Nashville for my first fitting and another round of x-rays. We met with the brace maker and he presented my brace to me. Boy is it pink – it’s the color of bubble gum! I was told I would wear “Gummy” sixteen hours a day until I was done growing.

At the end of July, we went back to my doctor in Nashville. My x-ray showed that my curve is progressing and that I am one of the small percentage of girls that don’t respond to bracing. I will need to have spinal fusion surgery. In October, I had an MRI to learn more about my scoliosis and found it has gotten even worse. On December 19, I had spinal fusion surgery at Vanderbilt. My surgeon is amazing and was able to get my curve from 68 degrees before surgery to 5 degrees after. I am doing great after my surgery!

Before and After Surgery X-Rays

I was able to try out for track back in the spring and did make the team. I got to run on a relay team with three of my good friends. We had a fun season.

In addition to track, my hobbies are texting, hanging out with my friends, drawing and SHOPPING! I want to be a fashion designer when I grow up. I once entered a contest to design a wedding dress out of toilet paper. It was amazing (if I do say so myself)! I didn’t win, but I was the youngest contestant and everyone loved my design.

My doctor encourages lots of exercise, before surgery I was taking pure barre classes three times a week. pure barre is a combination of core strengthening, Pilates and yoga. It is kind of hard, but I love it and know that I’ll have excellent posture after this is all done. I’m also experimenting with different kinds of exercise and fun activities – my dad and I go indoor rock and we’re planning to try stand up paddle boarding soon. I’m having fun learning new things and can’t wait to get back to doing them all.

When I first found out about my scoliosis I was scared and confused. I’m happy that I now have the opportunity to make new friends that understand exactly what I’m going through and I can’t wait to encourage others as they go through scoliosis too! I’m very determined and once I sent my mind to something, there’s no stopping me. When I was eight, I decided I wanted to buy my own laptop. I started making and selling bottle cap jewelry and magnets. Within four months, I was counting out my money at Best Buy and buying my new laptop. Who knows, maybe someday I’ll be designing clothes for girls wearing scoliosis braces!